I know a decent amount about Cerebral Palsy or CP. After all, I live with it every day. September 4th is (or was) World Cerebral Palsy Day. Cerebral Palsy is an umbrella term describing a set of neurological disorders of varying severity that affect an individual’s movements. CP is the most common motor disability in childhood.

Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. As noted by the fact that CP is classified as a neurological disorder, CP originates from damage to some part of the brain. What parts of the body are affected and how severe of a case of CP occurs depends upon where the damage to the brain occurs and how severe the damage is. There are multiple types of CP and, even within these types, there are varying degrees of severity. These types include spastic (tight muscles), dyskinesia (Uncontrollable movements), and ataxic (Poor balance and coordination) and each has their own distinct characteristics. The part of the body affected by an individual’s cerebral palsy is denoted by terms such as diplegic (lower half, usually legs), hemiplegic (one side of the body), and quadriplegic (affecting all four limbs). In a relatively mild case of CP, an individual might only walk with a slight limp or the dragging of their foot. In a more severe case, the individual might not be able to walk, eat, or complete of daily tasks without assistance.

Given that Cerebral Palsy impacts every individual in a slightly different way, I have decided to describe what the term cerebral palsy means to me while further elaborating on the condition.

NOTE: I have spastic diplegia as a result of being born four months pre-mature. My Cerebral Palsy is not anyone else’s and CP affects each person differently.

Here we go:

I suck at Jenga and any other game or activity that requires precise movements: like many other people with cerebral palsy, my fine motor skills are affected. Fine motor skills involve small muscle movements and influence the hands, wrist, fingers, feet, toes, mouth, and tongue. Actions affected by your fine motor skills include grabbing, poking, speech, typing, and writing. Since my fine motor skills are affected in this way, I have a difficult time writing or typing quickly, grabbing certain items on occasion, and poking those dang Jenga blocks out without knocking over the whole tower!

Tight muscles: Spastic forms of CP result in tight or rigid muscles in the affected parts of the body, otherwise known as spasticity. Spastic CP is the most common form of cerebral palsy with spastic CP affecting about 80% of people with cerebral palsy. Since I have spastic diplegia this means that my lower body, especially my legs, are affected. These tight leg muscles mean that I am unable to walk and use a manual wheelchair to get around. In milder forms of CP, the spasticity is less severe and only results in an individual walking with a “CP gait”. This gait is distinctive to many individuals with CP and allows many of us to spot someone with CP in a crowd. In more severe forms of CP, this spasticity can affect multiple limbs or even the whole body. In these cases a power chair or other motorized device is often required.

A very loose trunk and extremely poor balance: Anyone who knows me knows that as tight as my lower body is, my trunk (the chest, abs, and neck area) is that loose. If you ever see me somewhere look at my hands and arms. More than likely, they will be bracing me up in some way. This includes having a death grip on the metal portion of my wheelchair that is next to my knee, bracing my weight on my desk when typing or writing and usually typing majorly with only one hand while using the other hand solely as a balance point. In line with this, I, and many other people with cerebral palsy, have balance issues. This means that someone with CP could have trouble sitting up straight or walking without falling. If someone or something bumps a person with CP unexpectedly (and even if they expect it), they are likely to stumble or fall. While this accepted as part of life with CP, it does not make face planting any easier or less painful! Please be considerate of this fact when trying to help someone with CP. NEVER grab them, or any of their medical equipment or mobility aids, without receiving permission (this goes for every other disability too). This type of action could cause individuals with CP to lose their balance and be hurt.

Constantly battling stereotypes: I guarantee that when most people meet me and find out I have CP, they would not think these things describe me: top 10% of his high school graduating class, 33 on the ACT, college graduate with honors in four years, graduate student, graduate assistant with Auburn Athletics, and a college athlete. For many people with CP the stereotype of a physically incapable individual with mental challenges is wrong. I strive everyday to show those stereotypes are wrong and do my best to correct ignorance.

People with cerebral palsy can be, and are, successful in every phase and part of life. Our job as a society is to not limit them based on a stereotype, inaccessibility, or a lack of opportunity.

Author: Phillip Crain

Phillip Crain graduated from Auburn University in 2014 with a BA in History and he is currently in graduate school there pursuing a Masters in Administration of Higher Education with a concentration in Sports Management. Phillip is also a member of Auburn’s Wheelchair Basketball Team. When not in class, he enjoys watching sports, water-skiing, reading, and traveling. Oh, and he has Spastic Diplegia Cerebral Palsy.

Outstanding job of breaking down the various aspects of CP. Thank you for this info.

World CP Day

Hi Phillip. That’s a good account of life we CP. World CP Day is the first Wednesday of October, so this year it’s Wednesday October 7, 2015. There’s a campaign to Join the Map’ and share your story, a pic and location. We’d love to have you on the map! You can link back to this story Find out more at https://worldcpday.org/ Cheers from the team at World CP Day.

bobl07

Thank you for your comments.

windyh2o

Phillip, Thank you for sharing your personal life with us. I worked closely with individuals who have CP in a wide range of age and everyone is diverse with their abilities. Have you had any massage therapy? If not, check it out for spasticity.

Phillip

Yep! I have a Standing weekly appointment with Auburn’s massage therapist at Auburn’s campus medical clinic. Also, my weekly PT sessions growing up, once I was older, was essentially a 1.5 hour session of deep-tissue massage. Nothing else is quite as effective for me.

Help 2005

What does the term CP mean to you

bobl07

Thank you for your comments.

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